Tuesday, March 20, 2012

Challenges

The last two days, Diana had a neuropsych evaluation, the first since she was initially diagnosed when she was 3. It was hard for her, boring, questions and tests from strangers. I could overhear her frustration, and on occasion, hear her giving wrong answers to questions I know she could answer correctly. My husband and I, and her teacher, all filled out forms and questionnaires. I took in with me about 8 pounds of papers for the doctor to review, including 11 years of IEPs -- about a 2 1/2 inch stack of paper. I also had a 2 hour interview with the doc, while Diana worked with a couple of other people. Diana has bounced back, as children will, and is looking forward to school in the morning. I am exhausted and drained.

We did this because she's 14, because when she reaches her legal majority in 4 years, it may be necessary to have her made our ward. As it was pointed out to us, and we did realize, starting that paper trail needed to happen sooner than later. It is worrying as a parent, to know that your child may not be capable of being independent, leaving for university or getting a job, when other kids will be. It's just one more isolating thing that separates us from the other families in the neighborhood.

One nice thing that's happened is that she doesn't meet the qualifications for summer school. She is retaining what she learns, and the point of summer school is to keep kids from backsliding in their education. As was pointed out to me by a special ed. teacher friend, "it's a good thing; she's growing." This frees up the entire summer, offering the possibility of a family vacation. Which has its own problems. With the TSA aggressively searching people, I cannot, cannot! subject my child to that. It's hard enough to try and teach her the concept of "bad touching," but if she has retained any of that teaching, now I have to tell her it's OK for this stranger to touch her when she doesn't want to be touched. Not an option, not for her, and frankly, not for me.

Driving is fine, she loves to travel in the car, but gas prices are getting outrageous, and it's not even Memorial Day. She also wants to stay in a hotel and swim in the pool. OK... but we can probably do that without leaving the county, let alone the state. And watching her splash in a hotel pool isn't my idea of a good time. My husband and I would love to visit some of the National Parks out west, but getting her to walk anywhere that doesn't involve a McDonald's is like walking a cat on a leash. Except with a lot more griping.

I thought it would be fun to go to the Hershey Experience, in Hershey, Pennsylvania (she is a big fan of their chocolate bars), and also to Easton to the Crayola factory. Then I looked up the driving distance... it's over 700 miles, about 13 hours in the car. Ouch. That's a helluva drive when she might not want to be there in the first place. Admission to both those are very reasonable; the biggest expense would be gas and lodging. So, strike one on that idea.

I suggested something closer to home in Ohio, the Neil Armstrong Air & Space Museum. But with that, we have the issue that Diana would be mad that she couldn't FLY in the rocket. Plus my husband is pretty annoyed with the state of the space program, so she'd be mad, he'd be mad, and I'd just be tired. Strike two.

We've tried things before. They usually don't work out. The best vacation Diana has been on was southern California, and she wants to go back. We're not going to SoCal. (Not flying, too far to drive.) The best vacation that Marc and I have been on was Hawaii. (Not flying, can't drive, plus it's too late for reservations for all the things we'd like to take her to.)

No suggestions are forthcoming from my husband. My suggestions are impractical or not regarded enthusiastically. So fine. I give up. They can stay home, and I'll take a vacation alone, just like I have for the last 3 years. I don't know why I bother.

I'm tired, I'm frustrated, and I have a headache. Sorry for the defeatist attitude, but you know what? this is REAL. It may not be uplifting and heartwarming and sweet, but it is honest...